I accidentally posted this to my other blog... but it probably didn't make a lot of sense to some of my readers who don't follow both. Oops! So here's the post, where it was intended to be.
So, it's time to tell you about what happened after taking the LDN.
You can get good info on LDN here and here.
Well, first of all, I stopped feeling like death warmed over. I could get in and out of the car, walk to wherever I wanted to walk without more than the usual arthritic discomfort, run errands, sleep, shop for groceries. I had enough energy to pay attention to what was happening around me, and enough energy to care what was happening around me. Believe me, this is a HUGE blessing - my quality of life is so much better that I almost feel normal!*
When I reported my increased well-being to my doctors, my oncologist was encouraged and my integrative specialist was very excited. When I ran into my integrative specialist a couple weeks later and he saw how easily I was moving and how much better I looked, he was almost bouncing off the wall with excitement. Enough that I was taken a little aback, actually, but it's nice to have a doctor who really cares - and I was happy, too.
Is LDN a miracle cure?
Well, no, not really. I still have many of the side effects from the Aromasin. And I still have some of the symptoms of the arthritis, etc. But some is a whole lot better than it was before! I don't know how long I have to live - but anything that makes the quality of that time better is a blessing.
LDN seems to control some types of cancers for at least a certain period of time. Aromasin can control breast cancer for a temporary period of time (different periods for different folks). I know for a fact that the LDN improved my quality of life. And although I don't know how much is due to the Aromasin, and how much is due to the LDN, here are the results of my latest blood tests and PET/CT scan:
New activity in jaw, possibly due to cancer and possibly due to infection/inflammation.
Activity in spine, liver and spleen either stable or slightly less.
Liver shrunk, quite likely due to tumor shrinkage.
Tumor in neck nearly gone/inactive.
Tumors in chest completely inactive.
Tumors in hips smaller, uptake/activity gone from 12.9 to 9.5
Liver enzymes back in the normal range (top of the normal range, but normal range)
So although the results are not spectacular enough to make anyone sit up and take notice, they are reasonably positive.
Because of the massive doses of radiation involved in regular PET/CT scans and the large number of scans I've had done in the last year, we won't be scanning me again until there is evidence that things are heading in the wrong direction again (increased pain, tumor growth in the chest wall or lymph nodes)... so I won't be able to measure accurately what my progress is, or exactly what the time line is on the improvement end of things. But there is hope for a good few months for me.
Which is nice, because my wonderful mom and I are going to be traveling to California in April - I'm very excited to be going, and to feel confident that I will be able to enjoy this wonderful treat! I long to see the ocean again, for the first time in about 30 years. And I have hopes of seeing the lovely Roberta and her delightful husband, since we'll be in the Monterey area. Joy!!!
And more good news to come. In the next post.
I can't wait, can you?
* I've never been normal, even before the cancer; we can't expect LDN to do everything!
3/20/10
3/18/10
And Now A Word From...
I'm taking a brief pause before starting out again on my News.
A fellow member of my metastatic breast cancer list sent a link to this article by Dana Jennings in the New York Times.
With Cancer, Let's Face It: Words Are Inadequate
I don't feel in complete concert with Mr. Jennings, but then, he really can (compared to we Stage IV folks) be considered at least a potential Survivor - in other words, it is possible that he will live for years and years, and that it won't be the prostate cancer that finally pushes him off his perch. Whereas for me, in the unlikely event that I don't die rather soonish of the cancer itself, I will very likely die soonish of either the treatment or the stress that stems from the treatment. So the term 'survivor' that all the cancer orgs & professionals are so insistent on using for anyone currently breathing tends to fill my mouth with a bitter resentment that Dana evidently doesn't quite taste.
And I feel a bit more victimized than he seems to acknowledge, too - the ravaging monsters might be part of me, but they certainly are not my friends, and they are not listening to me when I Just Say No.
That said, he makes a good start on a discussion that needs to be had. Words are inadequate, but they are powerful. Even - perhaps especially - the ones we blurt out when we don't know what to say. That doesn't mean you shouldn't try, and risk making a mistake. It just means that you should pay attention if the reaction isn't as you expected, and perhaps ask more questions. Or, as Mr. Jennings suggests, just listen. Don't worry about feeling awkward - we feel awkward, too, but that, at least, won't kill any of us.
A fellow member of my metastatic breast cancer list sent a link to this article by Dana Jennings in the New York Times.
With Cancer, Let's Face It: Words Are Inadequate
I don't feel in complete concert with Mr. Jennings, but then, he really can (compared to we Stage IV folks) be considered at least a potential Survivor - in other words, it is possible that he will live for years and years, and that it won't be the prostate cancer that finally pushes him off his perch. Whereas for me, in the unlikely event that I don't die rather soonish of the cancer itself, I will very likely die soonish of either the treatment or the stress that stems from the treatment. So the term 'survivor' that all the cancer orgs & professionals are so insistent on using for anyone currently breathing tends to fill my mouth with a bitter resentment that Dana evidently doesn't quite taste.
And I feel a bit more victimized than he seems to acknowledge, too - the ravaging monsters might be part of me, but they certainly are not my friends, and they are not listening to me when I Just Say No.
That said, he makes a good start on a discussion that needs to be had. Words are inadequate, but they are powerful. Even - perhaps especially - the ones we blurt out when we don't know what to say. That doesn't mean you shouldn't try, and risk making a mistake. It just means that you should pay attention if the reaction isn't as you expected, and perhaps ask more questions. Or, as Mr. Jennings suggests, just listen. Don't worry about feeling awkward - we feel awkward, too, but that, at least, won't kill any of us.
3/16/10
News, News, and then... more News
I'm going to break this up into a few posts, because some of it is really, really important. I don't want anything to get buried and go unnoticed. And I don't want to get sloppy or forgetful in my reporting. And most of all, I wanted to make sure that I wasn't letting things get overblown in my head, so I waited to talk about this until I had some evidence to back up what I was saying.
So here's my story. At least, here's a part of it.
Let's go back a bit, back to December of 2009 and January of this year. If you look at my posts from that time, you will see that I had a big progression of my cancer in the autumn, and that between the progression and the Aromatase Inhibitor (Aromasin) that I was prescribed in November, I was having some problems.
I was understating the problems in my blog, actually, because I didn't want to be too much of a Whiner or a Downer. Well, let's face it, what I did write was Downer enough. I hated being where I was; I didn't want you to hate what I was.
I was basically feeling about 40 or 50 years older than my current half century. I could no longer walk normally - the bone pain in my hips was getting worse by the day, and not only could I barely hobble a few feet, but my left hip/leg was so weak that I couldn't even get it into the car on its own. I had to literally pick my leg up using my arms and lift it up. Getting out of a chair was a struggle that I feared I would lose at any moment. I couldn't run errands, because I couldn't carry anything without putting more weight on one hip or the other.
Really, I couldn't do anything; either it was physically impossible, too painful, or I had to be exaggeratedly careful for fear of breaking my fossilized coral reef of hip bone.
I couldn't get relief by sitting or laying down, and sleeping was impossible. I tried various pain and sleeping medications, but they gave little relief and had unpleasant side effects. I was lucky if I got an hour of exhausted napping in during any 24 hour period.
Which, along with my prognosis, left me in a clinical state of depression and anxiety. I was literally spending half of every day in tears. I felt that I was dying. Before that, I knew that I was dying. I know it now. But knowing it and feeling that you are doing it right at that given moment - those are two very different things.
There were other distressing side effects from the AI, and some were worsened by the Metformin I was taking for the diabetes - joint pain, debilitating headaches, weight gain, bloating, abdominal pain and gastrointestinal dysfunctions of various unpleasant sorts, muscle cramps, nausea, fatigue, brain fog, skin problems (I'm 50 and have 'cradle cap'), hair loss. All of that is less than fun, certainly - but the bone pain and the depression were the worst, were what sucked all the joy and life right out of me.
And I couldn't whine about it too much. It stresses out the people who love you and who can do nothing to help you. It doesn't help relieve the pain, and the return on the investment goes down with use in terms of emotional release. And, you know, it's not a very successful ploy in terms of getting people to sit next to you at social gatherings.
So that's where I was during the Holiday Season. Not too good. And from what we could tell from the size of my palpable tumors, things were still roaring along in my little Internal Garden of Yuck.
So then came my post of January 13th. Which is when, after a year of me pestering my doctors about it, I finally got one of them to prescribe Low Dose Naltrexone. Because of the fast and furious progression of my cancer, I was allowed the off-label prescription on a 'compassionate use basis'. Because, you know, what was it going to do? Kill me?
So that's where I was on 1/13/10. I'd been taking LDN for a couple days, and at that time, mostly it just made me feel a little jittery at night while I was attempting to get a cherished microsecond of beauty sleep.
Within a few days more, the tumor in my chest was shrinking. I was sleeping just fine, thank you.
And the bone pain was nearly completely gone.
More in the next post!
So here's my story. At least, here's a part of it.
Let's go back a bit, back to December of 2009 and January of this year. If you look at my posts from that time, you will see that I had a big progression of my cancer in the autumn, and that between the progression and the Aromatase Inhibitor (Aromasin) that I was prescribed in November, I was having some problems.
I was understating the problems in my blog, actually, because I didn't want to be too much of a Whiner or a Downer. Well, let's face it, what I did write was Downer enough. I hated being where I was; I didn't want you to hate what I was.
I was basically feeling about 40 or 50 years older than my current half century. I could no longer walk normally - the bone pain in my hips was getting worse by the day, and not only could I barely hobble a few feet, but my left hip/leg was so weak that I couldn't even get it into the car on its own. I had to literally pick my leg up using my arms and lift it up. Getting out of a chair was a struggle that I feared I would lose at any moment. I couldn't run errands, because I couldn't carry anything without putting more weight on one hip or the other.
Really, I couldn't do anything; either it was physically impossible, too painful, or I had to be exaggeratedly careful for fear of breaking my fossilized coral reef of hip bone.
I couldn't get relief by sitting or laying down, and sleeping was impossible. I tried various pain and sleeping medications, but they gave little relief and had unpleasant side effects. I was lucky if I got an hour of exhausted napping in during any 24 hour period.
Which, along with my prognosis, left me in a clinical state of depression and anxiety. I was literally spending half of every day in tears. I felt that I was dying. Before that, I knew that I was dying. I know it now. But knowing it and feeling that you are doing it right at that given moment - those are two very different things.
There were other distressing side effects from the AI, and some were worsened by the Metformin I was taking for the diabetes - joint pain, debilitating headaches, weight gain, bloating, abdominal pain and gastrointestinal dysfunctions of various unpleasant sorts, muscle cramps, nausea, fatigue, brain fog, skin problems (I'm 50 and have 'cradle cap'), hair loss. All of that is less than fun, certainly - but the bone pain and the depression were the worst, were what sucked all the joy and life right out of me.
And I couldn't whine about it too much. It stresses out the people who love you and who can do nothing to help you. It doesn't help relieve the pain, and the return on the investment goes down with use in terms of emotional release. And, you know, it's not a very successful ploy in terms of getting people to sit next to you at social gatherings.
So that's where I was during the Holiday Season. Not too good. And from what we could tell from the size of my palpable tumors, things were still roaring along in my little Internal Garden of Yuck.
So then came my post of January 13th. Which is when, after a year of me pestering my doctors about it, I finally got one of them to prescribe Low Dose Naltrexone. Because of the fast and furious progression of my cancer, I was allowed the off-label prescription on a 'compassionate use basis'. Because, you know, what was it going to do? Kill me?
So that's where I was on 1/13/10. I'd been taking LDN for a couple days, and at that time, mostly it just made me feel a little jittery at night while I was attempting to get a cherished microsecond of beauty sleep.
Within a few days more, the tumor in my chest was shrinking. I was sleeping just fine, thank you.
And the bone pain was nearly completely gone.
More in the next post!
3/4/10
What I Did On My Not Summer Vacation
Hi, I'm back!!
I'm sorry I've been gone so long. This was, until the past week, an artifact of the slow but inexorable expiration of my poor old computer; for the last two months it has spent most of it's time stubbornly displaying what other Mac owners will recognize as the Spinning Beachball Of Doom, and it just got to the point where it took hours and hours to write one paragraph and download one link... just not worth the struggle, although I did manage (with a great deal of patience, alternating with a lot of very bad language) a couple very short posts on my other blog.
There was no point in my trying to use the internet for other things - not only was the computer dying, but my OS was so old that it wouldn't interface with such things as Flash Player and Adobe and... well, most other websites. I pretty much could only do email... and two weeks ago even email became a huge time-consuming chore. My computer was giving me notice (and possibly the finger).
So. After a struggle with my (non-existent) pocketbook and a brief wailing period of resistance, I caved in and bought a new computer. One that does not have my pertinent information on it, unfortunately, since the old computer is not wanting to cooperate with exportation. Evidently my old computer does not believe in Free Trade - its political leanings are strongly and stubbornly Protectionist, and so my laptop and I are on our own.
It is taking a bit of time for the new machine and I to reach a comfortable state of detente. But I have been working on it, and will continue to do so, and hopefully things will get better. In the meantime, if you haven't heard from me personally in a while (that would be, um, most of you), please send me an email - I probably have no longer got your email address, and need to hear from you in order to get it again.
I do have something important to talk about, but one important aspect of that won't be available to me until next week, so I will wait until then to spout off about it. In the meantime, I can tell you that:
1. I have a new laptop. It's a Macbook Pro; it's a bit big and heavy (I got the 15"), but the smaller version's screen was just too small for me to deal with comfortably, so I'll just have to deal with the extra bulk. I think I'm going to like it reasonably well, and it's been handy to have something I can take with me to keep me from fretting during the hour where you have to sit still before the scan. As I told the tech, you don't want to leave me alone in the dark for an hour with radiation coursing through my veins and nothing to do but think about what is going on inside. A bored and anxious me is akin to a bored and anxious 5-year-old, and nobody wants that kind of destruction going on in a place of healing.
2. The Cat is old. Very, very old. Much older and even more crotchety than my old computer. Also, the fur on her back is much more matted than the fur on my computer (she's a very furry cat, so there is fur on *everything* around here). Poor old thing. She is growing deaf, and also a bit senile, which apparently makes a cat very, very talkative and demanding. She also is getting really funny about our new lap blanket - thank you, Eve, it is beautiful! - which she adopted on the first evening on which it arrived. From then on she would not sit on Scott's lap unless that blanket was very particularly arranged on his legs, and she would not sit on anyone's lap unless Scott and The Blanket were simultaneously unavailable. I'm feeling a bit put out, since I used to be Favorite Flavor in the lap-sitting department. Now I just get the Morning Pre-Kibble Gripe Session. Whoopee.
3. The Boy is on tour with his school theatre group - they are driving southward on their performance tour, starting with Peoria. Yes, you read that right. Evidently it does play in Peoria, so they are wending their way downward, eventually to play in Baton Rouge and New Orleans. Twelve overly dramatic college students and their luggage, a techie, tons of props and equipment, and one very patient professor/director/producer, all stuffed into two vans and driving for whole days at a time. Dr. B is a brave, brave soul, deservedly loved by all who know him. We admire, but do not envy him.
4. No, I still have not finished the taxes. I am starting to feel that I will never finish the taxes. I am the Flying Dutchman of tax preparers. Or perhaps my taxes are the Cat who came back and just wouldn't stay away. This process has not been improved by the loss of the information that was stored on the old computer. Fear and Loathing In Minnesota.
5. The Parents and I have applied for tables at the Shepherd's Harvest Sheep & Wool Festival this Mother's Day Weekend. We haven't heard whether we will be allowed to actually vend there or not - time will tell. In the meantime, the Parents' book is still chugging along, and they are enjoying the talks they have given on the subject. Mom has only written two of her wonderful posts about their time in Scotland since last July - she got a bit sidetracked, between the book talks and supporting her daughters in their various health struggles - but if you want to read more about their adventures and see her beautiful paintings of the people and lands they love, you can find them here. Write to her and encourage her to post more often! And then come meet them - and myself - at Shepherd's Harvest Fest. We'd love to see you there.
That's all the news for now. I'll be back again soon, though - see you then!
I'm sorry I've been gone so long. This was, until the past week, an artifact of the slow but inexorable expiration of my poor old computer; for the last two months it has spent most of it's time stubbornly displaying what other Mac owners will recognize as the Spinning Beachball Of Doom, and it just got to the point where it took hours and hours to write one paragraph and download one link... just not worth the struggle, although I did manage (with a great deal of patience, alternating with a lot of very bad language) a couple very short posts on my other blog.
There was no point in my trying to use the internet for other things - not only was the computer dying, but my OS was so old that it wouldn't interface with such things as Flash Player and Adobe and... well, most other websites. I pretty much could only do email... and two weeks ago even email became a huge time-consuming chore. My computer was giving me notice (and possibly the finger).
So. After a struggle with my (non-existent) pocketbook and a brief wailing period of resistance, I caved in and bought a new computer. One that does not have my pertinent information on it, unfortunately, since the old computer is not wanting to cooperate with exportation. Evidently my old computer does not believe in Free Trade - its political leanings are strongly and stubbornly Protectionist, and so my laptop and I are on our own.
It is taking a bit of time for the new machine and I to reach a comfortable state of detente. But I have been working on it, and will continue to do so, and hopefully things will get better. In the meantime, if you haven't heard from me personally in a while (that would be, um, most of you), please send me an email - I probably have no longer got your email address, and need to hear from you in order to get it again.
I do have something important to talk about, but one important aspect of that won't be available to me until next week, so I will wait until then to spout off about it. In the meantime, I can tell you that:
1. I have a new laptop. It's a Macbook Pro; it's a bit big and heavy (I got the 15"), but the smaller version's screen was just too small for me to deal with comfortably, so I'll just have to deal with the extra bulk. I think I'm going to like it reasonably well, and it's been handy to have something I can take with me to keep me from fretting during the hour where you have to sit still before the scan. As I told the tech, you don't want to leave me alone in the dark for an hour with radiation coursing through my veins and nothing to do but think about what is going on inside. A bored and anxious me is akin to a bored and anxious 5-year-old, and nobody wants that kind of destruction going on in a place of healing.
2. The Cat is old. Very, very old. Much older and even more crotchety than my old computer. Also, the fur on her back is much more matted than the fur on my computer (she's a very furry cat, so there is fur on *everything* around here). Poor old thing. She is growing deaf, and also a bit senile, which apparently makes a cat very, very talkative and demanding. She also is getting really funny about our new lap blanket - thank you, Eve, it is beautiful! - which she adopted on the first evening on which it arrived. From then on she would not sit on Scott's lap unless that blanket was very particularly arranged on his legs, and she would not sit on anyone's lap unless Scott and The Blanket were simultaneously unavailable. I'm feeling a bit put out, since I used to be Favorite Flavor in the lap-sitting department. Now I just get the Morning Pre-Kibble Gripe Session. Whoopee.
3. The Boy is on tour with his school theatre group - they are driving southward on their performance tour, starting with Peoria. Yes, you read that right. Evidently it does play in Peoria, so they are wending their way downward, eventually to play in Baton Rouge and New Orleans. Twelve overly dramatic college students and their luggage, a techie, tons of props and equipment, and one very patient professor/director/producer, all stuffed into two vans and driving for whole days at a time. Dr. B is a brave, brave soul, deservedly loved by all who know him. We admire, but do not envy him.
4. No, I still have not finished the taxes. I am starting to feel that I will never finish the taxes. I am the Flying Dutchman of tax preparers. Or perhaps my taxes are the Cat who came back and just wouldn't stay away. This process has not been improved by the loss of the information that was stored on the old computer. Fear and Loathing In Minnesota.
5. The Parents and I have applied for tables at the Shepherd's Harvest Sheep & Wool Festival this Mother's Day Weekend. We haven't heard whether we will be allowed to actually vend there or not - time will tell. In the meantime, the Parents' book is still chugging along, and they are enjoying the talks they have given on the subject. Mom has only written two of her wonderful posts about their time in Scotland since last July - she got a bit sidetracked, between the book talks and supporting her daughters in their various health struggles - but if you want to read more about their adventures and see her beautiful paintings of the people and lands they love, you can find them here. Write to her and encourage her to post more often! And then come meet them - and myself - at Shepherd's Harvest Fest. We'd love to see you there.
That's all the news for now. I'll be back again soon, though - see you then!
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